The diagnosis of a terminal disease can strand people in a swamp of recrimination and despair. Or it can be a crystallizing agent: snapping people to attention and compelling them to make something of the life they have left. Sometimes it can do both.

The head of AIDS Rochester for 20 years, Paula Silvestrone's tenure has spanned HIV-AIDS' history, from its inscrutable and deceptively selective beginnings, to its emergence into a full-blown pandemic. Secretary of State Hillary Clinton called HIV-AIDS "the defining health challenge of our times," in a November 30 speech.

Silvestrone has seen victories: the arrival of antiretroviral drugs brought many people back from the brink - a miracle, she says. And there have been disappointments: vaccines remain elusive, though trials are still taking place.

Silvestrone's strategy has been to take AIDS Rochester's prevention message to gay bars, homeless shelters, black churches - where those most susceptible to infection can be found. The implementation of a syringe-exchange program caused some in the African-American community to accuse her of trying to wipe out their race.

Silvestrone retired from AIDS Rochester this year, at the same time the agency was merging with AIDS Community Health Center - a move to protect funding and share resources. (The new name is AIDS Care and it provides HIV-AIDS medical, social, and prevention services.)

Her proudest accomplishment during her time with AIDS Rochester, Silvestrone says, was the 1993 implementation of a syringe-exchange program. The exchange, she says, has helped reduce the rate of infection in Rochester's drug-injecting population.

"It's probably the most effective intervention I've ever been involved with," she says.

A slight, soft-spoken woman, Silvestrone came to AIDS Rochester in 1989 from the American Heart Association. She describes herself as a "left of center" personality, and so the nonjudgmental environment surrounding nonprofit work was, she says, a natural fit.

"I've lived in a bubble for 20 years," she says. "Sometimes it's a slap in the face when I get in contact with the real world. It's still pretty bigoted and hateful."

In a recent interview, Silvestrone talked about her time with AIDS Rochester, the changes she's seen in the HIV-AIDS world, and the challenges that remain.

The following is an edited version of that interview.

CITY: What was it like working with those early HIV-AIDS patients?

Silvestrone: It was like a whole other world. Really, our job then was to help people die: to try to get their support systems in place, their finances in place, figure out what was going to happen with their pets, their children. And help make it as painless as possible - someone to hold a hand because there's such a stigma not only to AIDS, but most people who had AIDS either had a substance-abuse history or were gay, so they were not only coming out to their families about AIDS - or chose not to - they were also coming out about their history. Which is what families often had a harder time with.

People in hospitals sometimes found that even the medical staff would not enter their room. Nurses would leave their food trays out in the hall. There literally were people who had no visitors; family would disown them. It was a very, very sad and dark time.

How did you and your staff endure and keep hope up for your clients?

You know, I often wondered that, especially for the case managers who were there every day.

This field attracts a certain kind of person to begin with: someone who knows what they're getting into and wants to provide that kind of empathy and be available to people when oftentimes, nobody else was.

I've also tried to keep everybody in the agency aware of why we're here. So in a staff meeting we would read the names of people who had died. And we'd have the case manager talk a little bit about that person, because everybody kind of develops relationships with the folks we serve.

How did the community respond to AIDS Rochester in the agency's early days? Was there anger, fear, or contempt?

Only when I tried to do things like raise money, set up a syringe-exchange program, create housing.... I tried to build apartments for people with AIDS, and that wasn't really popular in those neighborhoods.

I was scared. I still don't have my address in the phone book. There were public meetings where it got pretty steamy, and I'd get calls that were very threatening. I never wavered, because I knew it was the right thing, but it was scary.

I felt like my life was threatened with the housing. I felt like my integrity was threatened by the syringe exchange. I was accused of genocide because I'm a white person trying to give needles to black people: "You're giving our people the tools of death." I'm like, "No, your people are already using tools of death. I'm trying to give them clean ones so that they don't die."

It's hard for a white woman to stand up in front of a crowd of black ministers and tell them, "This is going to save your people." It's hard to be credible. Fortunately, I had some fairly reputable studies behind me at that point.

When and how did you see that things were improving, that there was progress being made in the fight against HIV-AIDS?

In the mid 90's, it was like a switch went off. When the antiretrovirals came on the scene - I think AZT might have been one of the first major ones that made a difference. And then very quickly we started seeing additional ones.

There are people I saw today who literally I once thought, "They're not going to be back again. We won't see them again." I mean they were skeletal, they were demented, they had infection after infection, hospitalization after hospitalization. And I thought, "That's it. They're not going to last."

If you see some of those people today, you wouldn't know they had HIV. It really was an honor to live through a time where such a miracle occurred.

It's not a panacea. I don't want people to be lulled into the sense that HIV can be lived with now, because we still lose people, just not at the rate we did.

It's hard to live with it. The medications are very toxic over time. Oftentimes we lose people to the effects of the medications as much as we do HIV. They're very tough on your liver, especially since these are folks who may have a substance-abuse history, may have hepatitis, so it's a double assault to the liver. They're hard on all the organs.

And it makes you metabolize fat differently. There's a syndrome where you can tell people with HIV who otherwise might look fit, but they have this little belly and they also accumulate fat on the backs of their necks and sometimes under their chins. And it's due to the effects of the medications.

They screw up your cardiac system, too. You could have really high cholesterol levels and ultimately, heart disease.

How long can life be extended on these medications? Can you live with HIV to age 75 and then die of an unrelated heart attack, for example? 

I don't know, because the medications are only 10,15 years old. So we don't know how long you can live with them.

They are coming out with new things, new science every day. They keep hoping that there's a vaccine that will actually help people who already have HIV, but they haven't had success with that yet.

There are two vaccine possibilities: one is to keep the virus level lower in your body if you've already got it. And they're also working on vaccines to prevent actually getting it.

You just never know what they're going to come out with next. But it's also a very tricky virus, scientifically. It mutates very quickly, so as soon as they can come out with a new drug, many people become resistant to an old one. It doesn't take missing many doses for you to become resistant.

Say I was on AZT and I skipped a few doses and it's not effective anymore for me because the virus mutated beyond it. If I have sex with you and I pass it to you, AZT will not work for you, either, because you now have a resistant strain.

So they're always running to keep ahead of it.

Is HIV-AIDS thought of now as a chronic-but-manageable disease, like diabetes?

It is. Whether or not people will have a normal lifespan is yet to be determined. But again, the medications themselves bring so many risks.

And it depends on the person: how well they tolerate the meds, what kinds they can be on, how much of the virus you got to begin with, what kind of virus you got to begin with, whether you got more than one type of virus. You could get different strains from me and from someone else, and they may need to be treated differently.

As a matter of fact, we tell people who have HIV not to have unsafe sex with each other because they could be passing strains; they could be passing on additional virus which increases your viral load, which makes you sicker.

I've always said that Stephen King couldn't have made this one up. Just the fact that it's such a tricky medical challenge and science challenge, but also that it infects the most disenfranchised populations in our society: the ones that people supposedly care the least about. And I think that kind of plays into a rumor - hopefully it's less prevalent now - in the minority communities that HIV-AIDS was actually started in a lab to kill off African Americans.

Why is it so difficult to convince minority communities to get tested for HIV-AIDS?

There are a lot of cultural reasons. Engaging minority communities in preventive medical care is a challenge in every aspect. And if you've got poverty issues, then a roof over your head or getting your kids to school or your substance-abuse issue or something else is going to take priority over getting an HIV test. Denial is a whole lot easier.

If you're a man who's having sex with a man, that's much more taboo in a minority community. As a matter of fact, one of the terms we use in prevention is "men having sex with men," because strangely, a number of men who do have sex with men don't self-identify as gay: "I'm just kind of doing this on the side." And they may be married and, unfortunately, bringing the disease home to their wives. I can show you a number of heterosexual women and that's exactly how it was transmitted to them.

And then on the heterosexual side, you often have gender power-balance issues, where you've got women who have lost many of the men in the community through imprisonment or murder. There aren't many male partners to be found, and women want to hang onto the ones they have. The male may be abusive if the woman questions him about his activities or asks him to use a condom. So it's really hard for a heterosexual woman who's not in an equal power position in her relationship to protect herself.

What are the emotions that HIV-AIDS patients experience?

It's a very scary and lonely place to be, I think, for most.

You ask people, especially when they first get it, and of course their imminent illness and death is the scariest part. Whether or not to share the news with people is also extremely scary. Thinking that they'll probably never have sex again, nobody will ever love them again. There's a lot of fear, and rightly so. Each of those things is something each person has to overcome.

I've always been a big proponent of mental-health service being integrated with AIDS services. I can't imagine getting through a lot of life without help, much less a disease like this that carries huge physical risks, emotional risks, and societal stigma, too.

What have you learned about the health-care system and its ability to address issues related to HIV-AIDS?

In the world of human services, it's still a very new field. We were able to not get bogged down with old traditions and old ways of doing things. We started with a brand-new disease, and we had to respond to it new ways. We weren't going to sit in our little white ivory tower and think people were going to come to us.

We had to be out on the streets. We had to be in gay bars. We had to be in parks. We had to be at homeless shelters. You have to take it to the people, and you have to be nonjudgmental.

There's a philosophy that's developed in the field of HIV and substance abuse called "harm reduction." And that's basically: we're not going to come in and say zero tolerance, total abstinence. That doesn't work very often. It didn't work for Adam and Eve, and hasn't really worked since.

You have to kind of meet people where they're at and say: "Let me tell you a little bit about what's going on with your body, what kind of risks you're putting yourself at. Let's talk about whether you're interested in making any changes. How about if we just start out getting you to clean your needles?" That was before we had syringe exchange: "We'll get you some bleach and we'll teach you how to do it."

Once we got clean syringes: "Why don't you come to syringe exchange once a week? If you're ever interested in talking about rehab, I'm here for you. How about we just make sure that you clean up that abscess where you've been shooting, and we can teach you how to shoot safer."

It's really getting people to feel like you care about them. One of the most poignant things anybody ever said to me was at the syringe-exchange program. A woman came in and she said, "This is the only place that anybody will look me in the eye." So they feel respected and their lives valued.

Most of society has this perception that they're monsters, that they're horrible people, that they're not like us. They are. They just maybe made some different decisions and had some worse luck along the way.

HIV-AIDS seemed to get a lot of attention for a period of time, and then maybe around the time the drugs were coming out, people started to have this change of attitude. There was loosening of behavior. A lot of people assumed you couldn't get it from oral sex, for example.

We had our focus on the gay community in the 80's and even early 90's. And then when it started infecting minority populations more so, the government just shifted all its money: "Now we have to do this." I used to cynically refer to it as "the population of the day." That's one of the follies of government: "THIS year it's migrants. What are you going to do for migrants?" And we kept saying, "Gay men! Hello! Still getting it, by the way."

At first, whole communities died off and youth, like all youth, didn't think they were going to get it. At the same time, you've got medications making people look healthier, so it's not in your face. Visibly, it kind of went away. It was easier to be in denial, then.

I think it was big news for a lot of years, and it was very dramatic news and it was scary. And after it kind of became mainstream and people got healthier.... The media lost interest, too. I mean, we used to have cameras in the agency all the time.

And there was somewhat of a schism. Initially, this infection was occurring in middle-class and affluent gay men. So there were family supports and whole communities to support people. And it empowered people to unify.

But once it started infecting homeless people and drug users and mentally ill people and minorities, the gay male population who had built up this whole structure to support AIDS services wasn't necessarily interested in this new population that was getting it.

And, you know, safe sex got boring after awhile. People started lapsing. The whole controversy about oral sex is really interesting. All risk is on a continuum. The question is: how much risk are you willing to take? Are you willing to be that one in however many who get it by oral sex?

The Obama administration is putting together a new national AIDS strategy. What should it include?

I think that he needs to start from ground zero.

The one thing that does differentiate this field from a lot of other nonprofits is that it is so political. We took so many steps backward under the Bush administration. They stopped funding anything that they thought supported drug activity or gay sex.

This is how ridiculous it is: We have an employee at our syringe-exchange site on Central Avenue who is funded by a CDC grant. That person's job is to refer people for services including substance-abuse services. But they cannot have anything to do with the syringe-exchange itself. They can sit there next to it, but they can't enroll people in the program, they can't counsel them about how to use the syringe exchange, they can't touch the alcohol wipes.... It's just silly. And this is a program that president after president's own staffs and commissions have said, "This saves lives. We should be doing this."